Another month

It’s official, I’ll be doing at least another month of physical therapy. I finally feel some muscles where I didn’t have any before, but my stamina just isn’t there. Certainly not enough for a whole day’s worth. It could be worse really. I am seeing some improvement, now we just need to speed that up.

6 weeks with no work

No, I’m not on vacation… I’ve gone onto short term disability to do another round of physical therapy. I need to build up my strength again. I tried working and doing physical therapy at the same time last time. Didn’t work out so well. The PT wore me out so it was difficult to work. But because I was so tired on the days I didn’t go to PT, I didn’t do a lot of the exercises I was supposed to at home. I still think I got some benefits out of it but it wasn’t as much as I had hoped.

Had my first session yesterday and my gut feeling was confirmed, I need to work on my lower body. Did just a few things and I was wiped out. Was wiped out today too. Honestly, not being expected at work is a great relief to me. I had been steeling my resolve every morning for so long and I got ground down. It’s tough to mentally pump yourself up every day. Having this time away from work will allow me to get stronger and hopefully recharge me mentally.

I’m also going to use the time to get some other appointments out of the way too. I need new glasses, I need a physical, I need a haircut, etc. I have been so tired that I have mostly just hung around the house on my days off. Now I can try to catch up! 

I’m also going to try writing some more on this blog, I’ve gotten out of the habit and I miss it…

Diet update

I’ve been pretty good about my diet. I’m allowing myself one day a week to eat bread or rice, the rest of the time it’s veggies and meat. I’ve felt pretty good, very little of the usual muddy headedness and balance problems. It’s also striking what happens when I deviate from it. My father and stepmother moved me into my new/old place (more about that in another post) and then took me out to dinner. We went to a really nice Indian place around the corner. You can’t very well eat Indian without bread and rice, so I ate bread and rice. Ice cream was offered later and I couldn’t say no. The next night, my mother made a family favorite, Hungarian goulash. I have no idea if it’s actually Hungarian or not, but it sure is tasty. It’s served over a bed of noodles. Well, it’s an unusual treat, and mom made it, so of course I was going to chow down. I felt lousy for the next two days. Dizzy, fatigued, and muddleheaded. Started eating my usual meat veggie diet and it cleared up within a day. Maybe it’s a coincidence, but it does fit in with the longer pattern I’ve noticed.

As far as the diet part is concerned, I weighed myself yesterday and I came in at 204. That compares with 219 three months ago. Yes, I used two different scales, but that’s a big enough difference that I know there’s been a real loss.  It’s good to drop the weight, my jeans certainly fit better. I’ve also started to check my blood pressure in the morning. I’m averaging around 120/67ish. The months previous to me starting my diet I was hitting 130 and 140 at my monthly infusions. Yes, it’s only been a handful of days, and my previous measurements were only done once a month where any old thing could throw them off. Still, I like the difference:) It’s possible losing the weight could be enough to lower the BP, I don’t really care. I’m going to continue weighing myself and taking my blood pressure, who knows, maybe I’ll start exercising or something too. The diet is pretty easy to stick to, especially since I have a cheat day built in. After I’ve been on it for several more months, I’ll go get my blood drawn and see what it looks like.

The diet

I’ve been on the diet almost two weeks now. Gotta say, I’m impressed. I think I’ve lost 6 or 7 pounds, it’s hard to tell since I don’t have a scale but my pants are now noticeably loose. My jeans had been uncomfortably tight, now I’m cinching the belt a bit more. Plus, I actually have to tie my pajama bottoms now. Plus, I still haven’t had any dizzy/lightheaded spells since I started the diet. All I’ve done is cut out most of my carbs. All I’m eating is meat and vegetables. Gary Taubes ideas made a lot of sense to me and so far I’d say he was on the right track.

He actually advocates a high fat diet, and I’ve been following that. One aspect of his theory certainly seems true, the number of calories really doesn’t matter. I have been eating eggs and sausage for breakfast and learning to love bratwursts, kielbasas, and other sausages. I’ve had more than a few burgers in the last couple of weeks. In short, I’m sure that my calorie consumption is far higher than it had been before, but my weight has come down. Eating at work has proven to be a little more challenging, I can only eat but so many salads. There is a mall Thai place, I can eat there (with no rice) since they don’t bread their meat and they have lots of veggies. I’m going to have to find some variety there so I don’t go crazy.

As much as I love my white rice, bread, crackers, not to mention sweets, it hasn’t been all that hard to do this. Partly I think it’s because what I do eat is so filling I don’t have the cravings to munch nearly as much as before. I’ve also found some things that allow me to snack, like Trader Joes power berry trek mix (almonds, cashews, dried cranberries, and yes, some chocolate) and their Soy and flaxseed chips. I do have to watch them, but they have a lot of fiber so they aren’t as carb heavy as regular chips are.

I’m also eating more veggies. Trying to eat more salads, green beans, and mixed vegetables. Yeah, they have carbs, but not a whole lot. Think I’ll be OK with a few creeping in here and there:)

Weight is only one part of course, I’m going to try to keep tabs on my blood pressure, cholesterol, etc. Taubes is adamant that there is very little science to back up the conventional wisdom that fats clog up your arteries. Still, when you go against the grain, you need to make sure that there’s a reason the conventional wisdom is what it is.

Anyway, I plan on keeping on as long as I keep losing weight and feel good. I’ll keep you updated!

wow

Had my first physical therapy session yesterday. It was mostly an initial screening, seeing where I was and what I wanted to do etc. The physical therapist was happy with my general strength and flexibility. I kept trying to tell her that most of my problems don’t show up until I’ve been on my feet for a while, but she reassured me that most of her patients come in much worse. I had gone in worried about my strength and balance, in that order. My function strength seemed OK, but my balance was actually worse than I thought.

I did a simple test, stand on one foot for 30 seconds. It was tough on my right foot, and my left was noticeably worse. Doing with my eyes closed was hopeless, I was going over in under 5 seconds. She assigned a list of 5 exercises to do. We would concentrate on balance first and then work our way into the strength part. She thought I’d be able to do the first three with little problem, but that the last two would be challenging. I went home and then started my exercises a few hours later. Wow. Standing on one foot was still challenging to me, but rowing 2 sets of 30 seconds on each foot was really difficult, it really took it out of me. And that was the first exercise! The second one involved standing on one foot while moving the other leg. I couldn’t even do two sets of that.

I called it quits for the night. I figured that between the exercises at the office and the food shopping I had done, my legs were too tired. This morning was a classic example of struggling to wake from a coma. I was in bed for what seemed like forever, still dreaming but knowing that I had to get up. It took an unbelievable amount of willpower to actually get up. There was no way I was going to get to work on time, so I called them up, ate, and then did my exercises. I think my initial suspicion was true about being tired the day before because this time I was able to do both sets of both exercises. It was still difficult, but I could do them. I was tired though. Had to rest afterwards. I tried going to work, but that didn’t work out so well. I knew I was in trouble when the walk from the car to the store totally wiped me out. My legs were rubber, and my glutes, calves, and hamstrings were all aching. I turned right around and went back home. As bad as I felt, standing on my legs for another 7 hours was not going to do me any favors.

So I’m guessing my currently prescribes exercises are both strength and balance ones. I have so little strength in my legs that even standing on one foot for 30 seconds at a time is a good workout. No wonder I felt so awful when I did 20 minutes on the exercise bike! I have my first real session tomorrow, I’m sure I’ll be really tired at the end of it. I’ve already warned work that if I feel like I do today on thursday, I won’t come in. Still, this is a different type of exhaustion, this is a physical exertion one, so I’m hopeful that even a few sessions like this and I’ll be noticeably better. Wish me luck!

Nutrition

Nothing will make you focus on your health like feeling lousy. November was a pretty bad month for me, missed a bunch of time at work. I’m feeling better now and I think, maybe, that a change in diet might have helped.

Here’s the thing about nutrition, nobody has any idea what’s going on. You can read all you want, you’ll only find two constants. Sweets, candy, pastries, etc. are bad. If you eat them at all, you should only do it once in a while. The other thing that is constant is that vegetables are good, you should eat them. Everything else is up in the air, even with vegetables. How much should you eat? Should you eat anything else? Should they be cooked? Any given recommended diet can be argued against. An all meat diet is better than vegetarian, meat is a kind of poison, low fat is the way to go, no high fat is, avoid eggs, eggs are good for you, low salt diets are good for people with high blood pressure, low salt diets might kill you, it goes on and on.

Russ Roberts made the connection between nutrition and macroeconomics in this episode of econtalk, a podcast about economics. There are a lot of ideas out there in the nutrition world, many of them are contradictory. When there is any science involved at all, it isn’t overly convincing and doesn’t do much to counteract anyone’s previous beliefs. In both fields, there is a lot of wisdom being given by experts, but there isn’t a whole lot of results to go with their ideas.

Gary Taubes has done a lot of research on nutrition and diet and has found that there is precious little evidence for the conventional wisdom of a low fat diet being good for losing weight and being heart healthy. What he did find seemed to point towards the opposite. He espouses a low carb diet and promotes the idea that sugars are the real killer. In the podcast, he and Russ talk about the Atkins diet and how well it works. It really does allow you to drop pounds quickly, it is repeatable and is documented in many places. The only catch is that it isn’t clear if you’re killing yourself doing it. That is, we have conventional wisdom telling us that eating all that fat will clog up your arteries, but there isn’t much evidence either way. He has spent a lot of time finding out how that theory has gotten popular, turns out actual science wasn’t as involved as good old fashioned advocacy was.

I had been feeling really lightheaded, dizzy, and out of it for a while when I heard this podcast. I started to think about what I usually ate and things like white bread (bagels, French bread, white bread on my sandwiches), rice, and potatoes. All of these things were on Taubes’ list of do not eat list. The carbohydrates cause an insulin spike and then cause general mayhem in the body according to his theory. I figured, what the heck, and tried to follow his advice.

Well, no more dizziness, my head was clear, and I wasn’t so effing tired all the time. What bread I ate was multigrain, pretty hardy stuff. I ate veggies, meats, and a little bit of brown rice. It wasn’t a subtle difference. Of course, it was hardly a rigorous trial either. Think I’ll do two weeks on his diet and then go back to my regular fare and see if I notice a difference. His ideas make sense to me, but there are other sensible diets out there too. Because it is impossible to sort out the signal from the noise in the nutrition world, I am going to go with what makes me feel healthier and follow that up with checkups. What else can you do?

I remember writing in grad school about how certain macroeconomic theories seem to work for a while and then they fall apart. It seems completely reasonable to me that economies can change and need different solutions at different times. I am open to the possibility that different people have different genes, different hormone levels, and different metabolisms and so need different diets. Is it possible that lots of those diets are good ones, for the right people? I dunno, but if I can keep feeling like this last week, I’ll be happy changing my diet a bit.

Saw the doc

When I went to the doc last, I wasn’t really having one of my good days, and it sounds like that clouded my perception of what happened and the advice I was given. They still haven’t gotten back the results of the JC virus antibodies test, but regardless of what it comes back as, I will continue to take tysabri. My doc explained that he doesn’t consider me to be a high risk patient for PML since I have never had any other MS drugs or anything else that could mess up my immune system. He also came as close as I think he could to saying that it would be a really bad idea to stop this particular treatment because of the outlook otherwise.

That’s a relief really. This drug has a really good record of reducing new lesions and slowing the progression of the disease. As a bonus, the side effect I have been getting from it has been me feeling better for the couple weeks after. There are now other, oral, treatments on the market now that seem to have the same effectiveness against MS, but also have more common nasty side effects like heart problems, etc. There are also some drugs that need to be injected either every other day or once a week that don’t work as well, and they have the predictable side effect of making you feel like you have the flu…

So, like I said, I’m glad I’ll be staying on this. They’ll keep monitoring me for signs of PML, but it’s still a rather rare thing. 200 people out of 50,000 have gotten it, and a significant number of them had immune suppressing treatments too. I like my chances…

I’m also going to start going to physical therapy. Not really sure what’s involved with that, but I think it’s a good idea. My muscle mass has gone down considerably in general, and in my legs especially. Thought it would be a good idea to get an actual workout plan targeting what I’ve got going on instead of me just killing myself on the bike or something. I don’t know what impact this will have with work, but it’s something I’ll have to work out.

So that’s the news, mostly more of the same, and that’s a good thing as far as I’m concerned.

Judging risk

Every treatment has risks associated with it. The big, bad risk for the treatment I’m on for MS is a brain infection known by the acronym of PML. It’s pretty nasty. If you’re lucky, you die from it. The ones that don’t are pretty severely brain damaged. When I had started my treatment, it looked as though the incidence of that side effect was 1 in 3000. In addition, the people that did get it tended to have a history that I didn’t have (previous use of immune sup present drugs). That’s not too bad of a risk although I would say that if given the chance to do something that had me dying in 1 out 3000, I wouldn’t do it in regular life.

The factor weighing on me from the other side is that I am in probably the worst of all demographics for MS outcomes. I am male, my symptoms showed up as motor skills first, and it also presented with lesions on the spinal cord. Looking at the data, people with those markers tend to deteriorate faster and end up less mobile than other populations. So disease management is important. Tysabri seems to be the only treatment worth a damn, despite the risk of PML, so that’s what I have been doing.

Now there is some new information out and it is making me question what to do. It turns out that all of the people that got PML also tested positive for JC virus antibodies. The JC virus is  relatively benign virus, unless you are doing something that compromises your brain’s immunity, then you can get PML. Last I read, about 60% of the population has been exposed to the JC virus. The new numbers suggest that if you have the JC virus antibodies, your risk of getting PML while on tysabri is 1 in 500.

That’s a lot worse than 1 in 3000. The risk of infection is still unlikely, but not as unlikely as I would like. The good news is that if I don’t have the antibodies, it doesn’t look as though I’ll be a candidate for PML at all, or at least until I’m exposed to to the virus… I got my blood drawn yesterday to test for the presence of the antibodies. I’m really hoping that they come back negative. If it does, I’ll continue doing my treatment. If it comes back positive, I’m not sure what I’ll do. Without treatment, there is a much better than 1 in 500 chance that I will be put in a very bad way from MS. On the other hand, it won’t kill me or damage my brain either. There really aren’t any other decent proven treatments out there.

So that’s the potential decision I’ll have to face, a more certain bad thing vs. a less certain very bad thing. Let’s just hope for a negative test result, that would make so much easier…

The power of suggestion

I was poring over some information on a new drug I was going to start when I ran across a fascinating table. It was listing the incidence of side effects with the drug as opposed to the group on the placebo. It was no surprise to find the drug had some side effects,what did surprise me was how there were side effects ascribed to the placebo as well. All of the instances of dizziness, upset stomachs, dry mouth, etc. in the placebo group had to have been caused by something else and yet I’m sure that those people blamed the pill they were taking because they were being asked about it. When they fill in the questionnaire about effects of the pill, any old thing that happened would be the pill’s fault.

Man, if I were in a study like that, I’d go crazy. I’m sure I would constantly try to outguess the study, to try to figure out if I got the placebo or not. Hell, I do that every day with MS. Any little twinge I feel I start to wonder if it is the MS or something else. It’s one of the more maddening aspects of this disease, it could manifest itself in almost any way.

My doctor threw in another wild card for me yesterday. I had just started to take some samples of the pill I mentioned earlier and I was talking to him about how it affected me. One thing that I noticed was how hungry I felt when I took the pill. That confused me because I thought that stimulants were supposed to suppress appetites. I haven’t really felt hungry for a long time now. I do feel the effects of being hungry, but I don’t really feel hungry if you know what I mean. One other thing that I mentioned was several times during the past week I suddenly felt as though I was on the verge of tears without knowing why. I wasn’t sad, or morose or anything, and the feeling passed fairly quickly. Still, it was unnerving. I figured it was a side effect of the pill. The doc pointed out that if I had felt that on a day I hadn’t taken the pill it wasn’t the pill. Hmmm..

He mentioned some syndrome about as long as my arm that described patients with lesions in the frontal lobe experiencing the physical aspects of emotions without feeling the emotion itself. Ugh. He checked my latest MRI and said he didn’t see any evidence of that. Whew!

Then he asked, “Do you think you’re depressed?” Well no, not really. He said that some of the symptoms fit, tiredness, cloudy thinking, lack of appetite, desire to sleep all the time… On top of that he also told me that some tremendous number of MS patients are also clinically depressed. Sometimes that’s from coping with a chronic condition, but other times it can actually stem from physical changes in the brain.

Great. I really don’t feel depressed, or morose, cynical, or anything like that. Yes, I do get blue and upset over my condition but I’m mostly optimistic in my life. Still, there are a lot of other symptoms that I have… Grrr…. Now I’m wondering if what ails me on any given day is MS, or depression, or maybe MS related depression, or MS caused depression…. Oh and guess what, there are pills for that too! I’m so sick of being offered pills, I’m so sick of worrying about juggling side effects. I am really leery about mood altering drugs. Anytime prescriptions for a certain type of drug skyrockets over a short period of time I am very suspicious. Anti-depressants certainly fall into that category.

My doctor did speculate that one of the reasons I might have felt hungry when I took the stimulant was that it lifted my mood. If my appetite had been surprised via depression, that would make some sense. Of course that also feeds into the suggestion that I actually am depressed but don’t realize it. For now, I am going to try this new pill and see how that works. I am going to continue to put off anti-depressants until there aren’t any other options, or until I convince myself that I really am depressed. Ugh.

Saw my Neuro today

He looked at my latest MRIs and found that nothing has changed in my head, no new lesions! Whew! It seems as though my Tysabri is doing its job in keeping the disease at bay. The challenge now is to figure out why I don’t feel as good as I did last year. I feel more tired, weaker, a little more muddle headed, and my very short term memory seems to be shot to hell. It isn’t uncommon for me to have my hand near the shampoo and wonder if I’ve already washed my hair. Or I think of something I want to look up online when I’m done doing the thing I’m doing at present. Even if, and maybe especially if, it is 30 seconds later, it is frequently gone.

My doctor thinks I might have some sort of underlying sleep issue like apnea. Could be I suppose. We’re also experimenting with some of my other medicines to see if they are the cause of any of these issues. He mentioned the possibility of Ritilin to help combat the fatigue. It seems that it is fairly common for folks with MS to take it.

There is also the distinct possibility that I am just really put of shape. That wouldn’t explain the memory thing, but it could certainly help explain a lot of the other things. Trouble is that I am frequently wiped out, especially after work. Exercising wipes me out, even going into the next day. I don’t feel as though I can work when I’m that wiped out. It’s a big reason why I’m in the shape I’m in. I wonder if I’m going to have to take some time off of work just to get going on that. I’ll talk to my doctor about that and look into gym memberships again. Groan, taking a pill is so much easier than going to the gym…

So I’m glad that the big stuff seems to be behaving itself, now to work on the smaller stuff…